Prognostic Communication and End-of-Life Preparation in Pediatric Oncology: a Mixed-Methods Study

Key Message : Accurate, timely, and clear prognostic information helps parents feel more prepared for a child’s end of life. However, prognostic information alone is insufficient. Pairing conversations with concrete “what to expect” guidance and supportive resources, or “actionable preparation,” may help reduce parental distress and the intensity of grief.

Abstract:

Background: Parental end-of-life (EOL) preparedness may mitigate perceptions of the child’s suffering and lessen prolonged grief (1). While high-quality prognostic communication promotes greater preparedness, how it shapes preparation remains unknown.

Objectives: To understand how, and which components of, prognostic communication influence parental EOL preparation.

Methods: We employed an explanatory sequential mixed-methods design. We used multiple logistic regression to analyze existing data from a cross-sectional survey of parents whose child died from cancer 6–24 months earlier (2). We then developed an interview guide informed by survey findings, conducted semi-structured interviews with parents who had been bereaved within the past four years, and analyzed transcripts thematically (3). Finally, we applied the Pillar Integration Process (4), a four-stage joint-display technique comprised of listing, matching, checking, and pillar building, to integrate two data strands, link statistical associations to lived mechanisms, and map convergence and divergence.

Results: The quantitative sample included 124 bereaved parents (mean age 46 years; 82% White; 64% mothers), and the qualitative sample comprised 15 parents (median age 43; 86% White; 93% mothers). Quantitatively, adequately informed parents were more likely to feel prepared than those who wanted more prognostic information (69% vs. 44%, p = 0.023). Integration linked this statistical pathway to lived mechanisms. Specifically, parents described that clear, honest prognostic conversations and concrete “what-to-expect” guidance supported EOL preparedness. Divergence indicated that prognostic communication alone was insufficient, as some parents distinguished understanding prognosis from the emotional and practical work of preparing. In contrast, others felt prepared despite desiring more prognostic information when they received other supports, such as peer connections.

Conclusion: Adequate prognostic information is associated with greater parental EOL preparedness. However, preparation also depends on concrete guidance about EOL care and access to supportive resources, allowing parents to begin the emotional and practical work of preparing for their child’s EOL.

References: (1) Broden EG, Mazzola E, DeCourcey DD, et al. (2023) The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life. Journal of Pediatric Nursing. 72:e166-e173.
(2) Snaman JM, Mazzola E, Helton G, et al. (2023) Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning. JCO Oncol Pract. 19(4):e527-e41.
(3) Ouyang, N., Backman, M., Knobf, M. T., et al. (2025). Preparing for a Child’s End of Life: Parent Perspectives. Pediatrics, published online: September 11th, 2025. https://doi.org/10.1542/peds.2025-072257.
(4) Johnson, RE, Grove, AL, & Clarke, A. (2019). Pillar integration process: A joint display technique to integrate data in mixed methods research. Journal of Mixed Methods Research, 13(3), 301-320.